"When they all make you feel like a problem girl, remember, you're no problem at all." Rob Thomas, Problem Girl

Monday, January 11, 2016

Remember when I said I was waiting to see what The Mighty would do in the wake of our conversation?

Well, I found out. And it wasn't pretty.

I told Vicki and Megan during the call that I was planning on posting my demands and guidelines on my blog. They made no attempt to convince me to refrain from that. They were well informed and should not have been taken by surprise.

So I posted them. And later that night, I got up the courage to post a link to that post in the Mighty Voices Facebook group. I said something along the lines of "I'm probably going to get jumped on by the parents for demanding they write about their kids with respect, so when this hits my breaking point, I'm out of here. Megan and Vicki know where to find me, as do the people in this group who have been willing to listen and learn." I also emphasized that Megan and Vicki were lovely, and that it was many parents in the Mighty Voices group who were nasty and rude to me and other self-advocates.

Imagine my shock when less than ten minutes later, my post was removed and I was removed from the group, as were many others, mostly self-advocates. The supposed rationale for this culling of the group was as follows, posted by Vicki in the Mighty Voices group AFTER removing people and emailed to all Mighty contributors:

Hi everyone,

When we first started Mighty Voices, we designed it to be a place for our frequent contributors to connect and collaborate. We will be making changes to Mighty Voices in the next few weeks as our new community manager comes on board. The first of these changes is that we want to return Mighty Voices to what it was designed to be. For this reason, we are removing anyone who hasn't submitted a story for consideration on The Mighty in the last four months.

Please know this doesn't make you any less a part of The Mighty. We are so glad you're a part of our community, and we hope you continue to contribute to our site. If you have any questions or concerns, just let me know.

Best regards,Vicki SantillanoSenior Editor | The Mighty

Let's say I give The Mighty the benefit of the doubt and take their explanation at face value. What exactly does kicking contributors out of the Facebook group who haven't contributed in four months accomplish? It in no way goes to the root of the problems, not even close. All it does is make the Facebook group easier to manage for them. And as a former Facebook group moderator, I can tell you that when your group is growing, you don't kick people out. You hire more moderators. Hmmm....who suggested that? Oh right, I did.

Contributors were given no warning before being removed. None. Zero. The explanation came after the fact. There was no chance for anyone to redeem themselves by submitting a post in a timely fashion if they wanted to stay in the group. We were punished for crimes we didn't even know we committed.

But what angers me the most is the swift removal of my honest post with no explanation whatsoever. Vicki and Megan have done no moderation whatsoever over the past two to three weeks in the cesspool that is the Mighty Voices Facebook group. Now, all of a sudden, it was as if they realized that they should be doing something. But instead of moderating hateful and offensive comments (see below for some samples), they removed a post that I warned them I was going to write, which wasn't even offensive towards them (the worst I called them was lackadasical and naive, if you recall, and I pointed out some perfectly understandable reasons that they might be that way). I don't know whether the blog post itself upset them, whether it was my direct commentary on Facebook accompanying the post, or something else entirely, because once again, I got no explanation, no apology, nothing.

Meanwhile, posts like this are still up, some in Mighty Voices and some on the main Mighty Facebook page (screenshots posted and described below):

This was in response to the post by a mother, written under her real name, with a photo of her son, and going into detail about her son's bathroom problems:

A partial screenshot of a Facebook thread. Names and profile pictures are blacked out for privacy, with different colors representing the different commentators. The first comment says "Wow tmi I'm glad my parents never posted my bathroom problems to fb". It has ten "likes", All other comments are replies to the original. First one under the original says "It's more than that. Its a story of hope." It has three "likes". Second one says "I'm sorry that all you see in this story is "bathroom problems". Perhaps you need to broaden your perspective a bit to get the real meaning in this story." It has 12 "likes". Next one says "Although it is a great story of a stranger helping someone else, it's embarrassing for her child if and when he does find out mom put the story all over the internet. Kids with Down Syndrome, even in adulthood, have feelings. And if someone pointed out, "Hey, that's the boy from that bathroom story on The Mighty, I'm sure he would be mortified. Even the lowest functioning can get hurt feelings from this. Next comment says "Very true, that's gonna be humiliating for the kid." It has two "likes". Next comment says "There is a bigger picture here people." It has two "likes". Next comment says "Get a grip people! This little boy had Down's Syndrome and Autism and was non verbal! His mother would be more than thrilled if her son COULD read this and be embarrassed! Forget any embarrassment and look at her horrible predicament...being a mother..." The comment is cut off with a "see more" link and has five "likes". Final comment is from the same person who said that it was gonna be humiliating, and says "So what you're saying is that this kid has no right to privacy because of how severe his disabilities are? That's messed up. Every single person has a right to confidentiality no matter what their ability." It has four "likes".

So, in essence, in this thread, we have people saying "People with disabilities have feelings." and other people very nearly literally going "No, they don't."

This next screenshot was part of a comment thread on an unknown post.

Screenshot of a Facebook comment, with name and profile blacked out for privacy. Comment reads "Disabilities are meant to teach others! To serve, to help, to be humble, to be patient. There is nothing wrong with that. Let disabilities inspire." The reply by Kelly Ford (who gave me her permission to show her name and picture) says "Disability is meant to teach and inspire? Could you perhaps be more clear about this point? My son, myself, and others do not feel our "purpose" in life is to inspire and teach solely on the basis of a disability. Most certainly not as a minor child who will grow up and have a digital caricature of ourselves painted permanently online for the "inspiration" of others. Especially in a narrative we did not choose ourselves. Perhaps I have misunderstood....I apologize in advance if I missed something here. Just looking for clarification."

Apparently, I exist solely to inspire people. Silly me, I thought I existed to live my life. This is a complaint I hear frequently from people with visible disabilities in particular and something I encounter often. When I am getting my coffee or going to class or catching a train...I am not there to educate you. I am not there to inspire you. I am there to get my coffee or go to class or catch a train, just like everyone else. No one else has this expectation placed on them that they must be available to satisfy people's every whim every second of every day. Yet, because we are disabled, it is not only expected of us, it is demanded of it. It becomes our obligation, our job, and we are continually expected to do it for free (which is, of course, one of the problems with The Mighty and other sites, though frankly a small problem in comparison with the rampant ableism and inspiration porn that is becoming clearer on The Mighty by the day).

These types of posts (and these examples are truly the tip of the iceberg) promote stereotypes and use disabled people as props for the satisfaction of the able. Demeaning, offensive, and frankly dangerous posts are still up....and yet my honest critique of my phone call with the Mighty editors was removed almost as soon as it was put up. It's hard not to suspect ulterior motives here.

I have to ask Megan and Vicki, what the hell did you think I was going to do? You knew I was going to put my demands and guidelines up on my blog. Did you think I wasn't going to talk about the call itself? Did you think I wasn't going to post it in Mighty Voices? Did you think I was posting it on my blog just for my own amusement? I'm highly confused here.

Obviously, I wasted my time and my breath trying to educate people, including The Mighty editors. I put in my own time, and did a lot of work both putting together my demands and guidelines, and talking on the phone with The Mighty editors (which, incidentally, is a fairly inaccessible medium for me, because phone calls give me severe anxiety). I did all this for free, when I could have spent that time on far more productive things that could actually make me money. I did all this because I thought there was a chance The Mighty would listen. I am beyond disappointed. I am hurt, enraged, and disgusted. The Mighty did not even have the decency to be honest about their extreme indifference and even antagonism towards disabled people. I would have respected them much more if they had. They pretended to care, and then stabbed us in the back with a flimsy excuse and no apology.

It's clear that The Mighty does not care. They disrespected me, and they disrespected a lot of other people, both self-advocates and non-disabled parents. I will be asking The Mighty to remove my pieces and my profile from their site. You do not try to silence me, and yet keep my pieces up on your site for the clicks.

Goodbye, The Mighty. I'm sorry that actual disabled people had the nerve to critique a disability-related site.

8
comments
:

I am new to this community but I will tell you, your efforts are not in vain. Your voice may not have reached the people you hoped it would (namely, the people in charge of what goes up on The Mighty), but some of the people in there were reading and following you. You will make your own waves without them! Thank you for being a much-needed voice for humanity.

Give it up unless you have incredible mental reserves. I've dealt with parents of kids with disabilities for years. Many are narcissistic (I suppose the stress of having a kid with a disability brings out tendencies that were already there) and you can't argue with a narcissist. They get some head trip from doing the stuff you're posting about and you can't change it - no one can. Take care of yourself.

Wow! Ouch! So sorry all of this happened to you Cara. I had a feeling they would not take the criticism well. People do not like to be told how to do their job in general. It could be that they didn't mind you posting on the blog until you posted the blog on the Mighty itself. But if they gave you permission they should keep their word!!!! I ALWAYS ask permission before posting something on Crip Video Productions because I know people must be treated with dignity when it comes to medical conditions, diseases, and disabilities. Please know that you did the right thing by giving them a chance to change and perhaps someday in the future they will learn. Your work is not in vain my friend!

The only purpose of The Mighty seems to be perpetuating ignorance of disability issues by over-protecting mothers who are afraid of dealing with their kids' disabilities as well as other adults who are equally bad at dealing with the real issues of disability and culture.

It seems like every time I dare open up a story on the site, it reeks of inspiration porn - or it angles for it, which is even worse, imho.

I am glad to see you making an effort but unfortunately I think it's in vain. Maybe it's because I have grown into a grumpy old cynic of a man. Who knows?

I feel your pain and applaud you for telling it like it is. I tried to encourage the Mighty to make their site accessible to those of us who use large print. They haven't yet bothered to respond. How can I respect a site that doesn't bother to make itself accessible to people with disabilities? I check back periodically to see if they've fixed it yet, but they haven't so I haven't read anything on there in ages. (your site, by the way, works well in large print!).